Combination of all


#1

Before I actually start I need to say I am not a hypochondriac, I have worked hard for most of adult life bought up two boys alone and live a pretty full life but at this moment in time I feel like I have every symptom under the heading Symptoms and you are the only avenue for me to spill this out to without anyone thinking I am pathetic so hear goes

i know that in actual fact I probably do not help myself because maybe I do too much expect too much and in the end I suffer too much ( really didn't want to use the word suffer but couldn't phrase it any other way)

This is me today.......as usual have woken up 6.30 (even though it's not a work day) to take my first meds (rasagiline pramerexole x2 and sinemet) I lay in the same position I wake up in for quite some time the natural instinct to turn and flow of turning have long gone, I have pins and needles in my hips both sides and I am generally uncomfortable but I need to think about moving.

so I get up because I need the toilet......legs like a board, ankles very stiff balance a bit whey hey does the toilet seat get lower in the night ????

im up now so that's it I'm up because once I get moving things improve over time even though I am so tired and could probably sleep all day I feel like I have wasted the day and I will only feel worse if I go back to bed or so I tell myself.

i just don't seem to be able to stop.....I just keep going and going until I drop....why?..

today I really must collect my prescription, lost my repeat so hoping gp practice has got its act together and sen it to chemist otherwise I will back and forth between the two to sort it. Missed having a leg massage yesterday so rescheduled for today and sadly attending a funeral pm, tomorrow is a work day for just 5 hours so will be up and off again........think I need to run away and hide.

and on top of all this I hurt....my lower back my neck hurt, pins and needles in my feet, dizziness, thought processes slow and it all seems so sudden in a way over the last couple of weeks.

i know this thing is progressive but does anyone else feels it comes in sudden waves and knocks you down for afew weeks or is it just me.

thank you for listening to my little rant and yes I know I only have myself to blame in a way but I want to live just that at the minute it's hard x


#2

Hi Newdidit

i can empathise with you i have the same problem , wake up as stiff as a board , major problems falling asleep at night when i do fall asleep i am so uncomfortable i end up having a restless few hours before i am up and making the obligatory trips to the toilet , which has a knock on effect during the day as i am so exhausted i do need to go back to bed to rest i have just come to the conclusion now if i need to sleep in day i do and i sleep where i am comfortable which more often than not is the recliner chair , it is extremely difficult to stay active when all you feel is exhaustion i know that only to well , you have to know your limits and know when to rest i quickly learnt that lesson


#3

Hi Newdidit

a) you've nothing to blame yourself for

b) if you can't rant among your colleague PwP, where can you rant?

c) personally, i think if you feel you're suffering you've every right to use that word. That's why it's in dictionaries

d) you're further along the journey than I am, so I hesitate to opine. But even I am starting to know what Parkinson's tiredness is and it makes me feel rubbish in all departments. i haven't yet worked out what the warning signs are, nor how then to manage not to "do to much expect too much" - if you work  it out before i do, please let me know!

e) Pramipexole is linked to OCD. Nobody mentions workaholicism as an obsession . . .

Keep ranting, it's good for the soul.

Best

Semele